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Sorry, I missed posting the last August update but in the last two weeks I was very busy with the AMG in Seattle, and working my ASO's agency booth at Charlotte Gay Pride and several back-to-school events at local colleges.

The crowd at Charlotte Pride was very receptive to our message about our ASO and it's services, condoms, and the ADAP crisis. Because the Charlotte ASO imploded over a year ago, my SC agency has been caring for several dozen clients from Charlotte and NC, so many people were interested in the services of Catawba Care. Part of our supplies for the event was a plastic tub filled, crammed, stuffed with safer sex packs (a sm. clear plastic bag with 6 condoms, 2 packs or lube, condom instructions, and a card with testing info) and though the event was from 12-8, by 3pm we had passed out all the packets and only had half a small basket of single condoms left to pass out. (The inital estimate is approx 30k visitors to the event! Totally amazing down here in the bible belt!!) We also gathered 265 signatures on a letter addressed to the two governors of NC and SC asking them to do their part to adequately fund the ADAP programs since there are approx. 1,300 citizens between the two states waiting for HAART.

so, without further ado, here are the ADAP waiting list numbers starting off September:ADAPs with Waiting Lists as of September 1, 20119,298 individuals in 11 states

STATE

AMOUNT

CHANGE

Alabama

211

22

Florida

4,022

93

Georgia

1,715

-14

Idaho

31

2

Louisiana**

1,056

23

Montana

28

0

North Carolina

340

8

Ohio

59

14

South Carolina

836

-1

Utah

50

1

Virginia

950

14

ADAP Sept. 1st Watch List**Louisiana has a capped enrollment on their program. This number is a representation of their current unmet need.

NASTAD has revamped their bimonthly report to include the amount of change from the previous report (a calculation I've been doing during the last year of posting), the % of the total waiting list that each state adds up to, along with the date of when each of these state started their wait list (the majority were started by mid 2010, so have been going for a full year now).

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leatherman (aka mIkIE)

All the stars are flashing high above the seaand the party is on fire around you and meWe're gonna burn this disco down before the morning comes- Pet Shop Boys chart from 1992-2015Isentress/Prezcobix

Am I understanding correctly that Ohio only has 59 people on the waiting list? Last month there were over 200 people waiting. Why is the change +14 people added? Not sure if I just don't understand the numbers (which isn't a stretch for me).

ADAPs with Waiting Lists as of September 1, 20119,298 individuals in 11 states

STATE

AMOUNT

CHANGE

Ohio

59

14

South Carolina

836

-1

I haven't been able to access a report from mid-to-end of August which must have shown some changes in the numbers. (this was the report issued while we were in Seattle) I know at the Pride Fest, I had accessed the SC numbers so I could post them and we had 941 on the waiting list. Somewhere along the line we lost over 100 people from our list, and nearly 200 from Ohio. I haven't heard about any new monies; but obviously something happened - and thankfully it was a move in the right direction!

added: I just called my ASO and they believe the change was just from some Fed funds being released. Nothing new, just a regular fund release. They also had the link to the missing ADAP report from Aug 25 which shows a -81 and a -104 change to OH and SC respectively.

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leatherman (aka mIkIE)

All the stars are flashing high above the seaand the party is on fire around you and meWe're gonna burn this disco down before the morning comes- Pet Shop Boys chart from 1992-2015Isentress/Prezcobix

I haven't been able to access a report from mid-to-end of August which must have shown some changes in the numbers. (this was the report issued while we were in Seattle) I know at the Pride Fest, I had accessed the SC numbers so I could post them and we had 941 on the waiting list. Somewhere along the line we lost over 100 people from our list, and nearly 200 from Ohio. I haven't heard about any new monies; but obviously something happened - and thankfully it was a move in the right direction!

added: I just called my ASO and they believe the change was just from some Fed funds being released. Nothing new, just a regular fund release. They also had the link to the missing ADAP report from Aug 25 which shows a -81 and a -104 change to OH and SC respectively.

After peaking above 9000 citizens enrolled in ADAPs around the nation, there is some GOOD news concerning some of the waiting lists. Some states have been able to reduce their waiting lists thanks to the final award disbursements of Federal ADAP funds. WIth state and federal funds now in place these ADAPs/State Health Dpts are able to complete final cost-projections for the remainder of the grant year and determine how many people can be enrolled into ADAP from the wait list. Hopefully we'll continue to see some of these wait lists shrink as the states begin to treat these clients over the next few weeks.ADAPs with Waiting Lists as of September 8, 20119,066 individuals in 11 states

STATE

AMOUNT

CHANGE

Alabama

176

-35

Florida

4,068

46

Georgia

1,659

-56

Idaho

33

2

Louisiana**

1,071

15

Montana

28

0

North Carolina

342

2

Ohio

79

20

South Carolina

601

-235

Utah

52

2

Virginia

957

7

ADAP Sept. 8th Watch List**Louisiana has a capped enrollment on their program. This number is a representation of their current unmet need.

NASTAD (http://nastad.org) has revamped their bimonthly report to include the amount of change from the previous report, the % of the total waiting list that each state adds up to, along with the date of when each of these state started their wait list (the majority were started by mid 2010, so have been going for a full year now).

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leatherman (aka mIkIE)

All the stars are flashing high above the seaand the party is on fire around you and meWe're gonna burn this disco down before the morning comes- Pet Shop Boys chart from 1992-2015Isentress/Prezcobix

There's some good news in the latest ADAP update. SC, OH, and AL have continued to lower their waiting lists thanks to the final federal ADAP disbursements for fiscal year 2011. OH has enrolled over 200 clients, SC has enrolled over 500 clients, and Alabama totally cleared their waiting list of nearly 200 clients. That's close to 1000 people with HIV who are now being properly treated. WooHoo!

However, on the sad side of the ledger, Florida continues to add 100s to their list and GA which cleared about 50 people has added another 50 to their list so they're getting nowhere fast, while VA will soon have a list with over 1000 people waiting for HIV meds.ADAPs with Waiting Lists as of September 15, 20118,804 individuals in 10 states

STATE

AMOUNT

CHANGE

Alabama

0

-176

Florida

4,175

107

Georgia

1,709

50

Idaho

35

2

Louisiana**

1,087

16

Montana

28

0

North Carolina

350

8

Ohio

21

-58

South Carolina

367

-234

Utah

58

26

Virginia

974

17

ADAP Sept. 15th Watch List**Louisiana has a capped enrollment on their program. This number is a representation of their current unmet need.

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leatherman (aka mIkIE)

All the stars are flashing high above the seaand the party is on fire around you and meWe're gonna burn this disco down before the morning comes- Pet Shop Boys chart from 1992-2015Isentress/Prezcobix

is there any sort of advocacy group in VA working with this issue? For example, several states have an HIV or ADAP Task Force that tries to coordinate rallies, along with contacting legislators about budgeting for the current ADAP crisis.

In FL they have held a couple of rallies about ADAP budgeting but with their state gov't so adamantly against receiving any federal funds, they haven't had many options but to keep pressuring their state officials until the next election. In SC, after several rallies, we did get enough officials to change their votes on the budget to partially fund ADAP which was better than their original proposal to defund ADAP entirely.

Do you know if there is anything like that happening in VA or any agency that's trying to coordinate across the state about the ADAP waiting list?

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leatherman (aka mIkIE)

All the stars are flashing high above the seaand the party is on fire around you and meWe're gonna burn this disco down before the morning comes- Pet Shop Boys chart from 1992-2015Isentress/Prezcobix

Gov. McDonnell has already proposed increasing the state share of funding for fiscal year 2012. I think the 2011 fiscal year ended on June 30th so I'm not sure when this will kick in. Previous to that they had some team in the state Dept. of Health co-ordinating getting waiting list people on alternate programs through pharmaceutical companies. But still none of this should have happened even in fiscal year 2011. From what I can tell some funding was restored earlier this year after protests, but it just came out of some "general fund".

There is a regional planning council for ADAP for the DC metro area but that also oversees Northern Virginia, but not the rest of the state. I've mostly just read things that show up in The Washington Blade. Everything I seem to read on this issue in this state neglects to mention the two years of budget surpluses.

Perhaps bocker knows -- he lives in Richmond, the capital.

The bottom line is that in Virginia it's a fake crisis -- purely political, ideologically driven by Republicans in the governor's office and legislature. Shouldn't surprise anyone seeing as how Gov. McDonnel is a graduate of Pat Robertson's Regent University, with an attorney general (Ken Cuccinelli) who fixated on reversing state colleges sexual orientation non-discrimination clauses as soon as he was sworn in. Waving signs in the air about AIDS doesn't do much with this crew.

what I found that worked, at least with some of my SC Republican legislators, along with waving signs (because it takes waving signs too to prove there is public support for the cause) were cold, hard facts. The SC HIV/AIDS Crisis Care Task Force partnered with Harvard Law to do a 2-yr study and put together a report. They found that the annual costs per person with untreated HIV was $86,485, while the annual costs of treatment are $11,000.

So when the legislators were shown that, right now, it could cost $36,786,85 to annually care for the 367 people on the SC waiting list, or they could spend $4,037,000 to treat them - which also by reducing the viral load rates would lower the rate of infection in our state - several of them actually voted to increase the funding to nearly the proper amounts needed.

It clearly takes sign waving, along with personal interaction, to not only change the minds of legislators; but sometimes to simply inform them properly on an issue about which they know absolutely nothing because of their religious-driven stigma. Hopefully Virginia has at least 974 actively rallying, campaigning advocates contacting their legislators about this budgeting issue.

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leatherman (aka mIkIE)

All the stars are flashing high above the seaand the party is on fire around you and meWe're gonna burn this disco down before the morning comes- Pet Shop Boys chart from 1992-2015Isentress/Prezcobix

is there any sort of advocacy group in VA working with this issue? For example, several states have an HIV or ADAP Task Force that tries to coordinate rallies, along with contacting legislators about budgeting for the current ADAP crisis.

In FL they have held a couple of rallies about ADAP budgeting but with their state gov't so adamantly against receiving any federal funds, they haven't had many options but to keep pressuring their state officials until the next election. In SC, after several rallies, we did get enough officials to change their votes on the budget to partially fund ADAP which was better than their original proposal to defund ADAP entirely.

Do you know if there is anything like that happening in VA or any agency that's trying to coordinate across the state about the ADAP waiting list?

This makes me really worried since I live in FL and am currently receiving my medicine from Welvista Pharmacy. My clinic tells me that I'll keep receiving medicine from them until I'm placed on ADAP, but that doesn't mollify my fears of Welvista's generosity running out.

- Dan

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“I tried to drown my sorrows, but the bastards learned how to swim, and now I am overwhelmed by this decent and good feeling.” —Frida Kahlo

Welvista is a non-profit agency (out of Columbia, right here in my home state of SC. Ken Trogdon, the CEO, is just the nicest guy!) that redistributes medications which had stepped up (with some federal monies) last year to help fill in the horrible gap when Florida's ADAP program totally collapsed 3 months before the end of fiscal FY2010.

Until recently Welvista had not dealt with HIV medications but other meds (like insulin etc) that must be taken regularly. It was just this last Feb-Mar, that they officially began to distribute all HIV meds after a federal grant to the agency and a federal payment to the pharmacies for something like $25 million that would compensate them for medications that Welvista would pass out to eligible ADAP waiting list patients. The Welvista program guarantees meds for one year (on a yr by yr basis) when it signs up regular clients, although they did do a limited 3-month run for something like 8000+ clients in Florida until more funding came through. There is no guarantee that Welvista will have funding for meds for it's clients for more than the year at a time when they sign up, so I doubt your clinic should have told you that you would remain covered until Florida ADAP enrolls you - because they've got a biiiig waiting list. Welvista is doing an excellent job; but w/o financing or meds, they may not have anything to redistribute in the future.

sorry, I couldn't sound more optimistic for you; but it's a bad problem with some states - and Florida is the worst! Have you considered moving?? LOL (and make sure not to move to any other state with a waiting list either )

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leatherman (aka mIkIE)

All the stars are flashing high above the seaand the party is on fire around you and meWe're gonna burn this disco down before the morning comes- Pet Shop Boys chart from 1992-2015Isentress/Prezcobix

Gilead...i was taking Norvir, Truvada and Lexiva....but the side effects were causing me more health problems, but I got them free also from their respective companies. The drug companies will provide their drugs to people on state ADAP wait lists for free if they have no insurance and fall within income guildlines

The drug companies will provide their drugs to people on state ADAP wait lists for free if they have no insurance and fall within income guildlines

I've never heard of that happening before. Welvista (out of Columbia SC) has a contract with all the HIV drug manufacturers to redistribute drugs to people who have applied and are on the ADAP waiting lists. And some ASOs are providing their clients (on the waiting lists) with medications.

I don't want to sound like I'm criticizing you or don't believe you, but the drug companies just aren't giving out free meds to people on the waiting lists - otherwise why would we need ADAP, or for that matter, the waiting lists? Why wouldn't people just get their meds from the companies like you are saying? I believe that there is probably someone who is acting as the middle man for your medications. Would you mind telling me more about your situation and/or ASO? (you can PM me this info, if you don't mind), because if you're getting free meds, we need to figure out how so over 9000 other people waiting on meds, who are physically in need of meds and financially eligible for assistance, can get meds before they get sick and/or die.

thanks for any help you can give me to figure this out.

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leatherman (aka mIkIE)

All the stars are flashing high above the seaand the party is on fire around you and meWe're gonna burn this disco down before the morning comes- Pet Shop Boys chart from 1992-2015Isentress/Prezcobix

I just got my Gilead card in the mail yesterday...their phone number for member services is 1800-206-7828. They give the meds for free cause they know we need them to live and we will eventually get on the program and they will make their money....The HIV clinic I go to is in a Hospital and their prescription assistance office helped me get signed up...just had to give them last years tax return and a few paycheck stubs

I still don't understand; but I'll be chatting with the staff at my ASO tomorrow to see what they know about this deal. I still think there's a catch to all this that I don't understand, otherwise all those people on the waiting lists (that use gilead products anyway ) should just jump off the waiting list and grab this deal to get free meds. (which begs the question of why are you on the ADAP waiting list? ) I mean, why wait around while these 10 states are just gonna let you die, when Gilead will give you meds?

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leatherman (aka mIkIE)

All the stars are flashing high above the seaand the party is on fire around you and meWe're gonna burn this disco down before the morning comes- Pet Shop Boys chart from 1992-2015Isentress/Prezcobix

the website states:"Gilead’s U.S. Advancing Access® program provides assistance to patients in the United States who do not have insurance or who need financial assistance.

As part of this program, Gilead provides assistance for people who cannot afford to pay for Viread® (tenofovir disoproxil fumarate) for the treatment of HIV and chronic hepatitis B; Complera™ (emtricitabine/rilpivirine/tenofovir disoproxil fumarate); Truvada® (emtricitabine and tenofovir disoproxil fumarate) and Emtriva® (emtricitabine) for the treatment of HIV; Hepsera® (adefovir dipivoxil) for the treatment of chronic hepatitis B; and Vistide® (cidofovir injection), a treatment for cytomegalovirus retinitis in patients with AIDS.

To find out if you are eligible for this patient assistance program, contact Advancing Access® at 1-800-226-2056 between 9:00 a.m. and 8:00 p.m. (Eastern)."

I spoke with Amanda from CATF here in Ohio. Ohio no longer has a waiting list. Extra money was allocated to resolve the funding issue. She indicated that records currently show there are a few people on the waiting list, but that is only because they can not contact those individuals.

That's great news at least for Ohio. Maybe it shows a progression to changing the mindset of funding? Perhaps other states will follow?

this last September update shows that while Ohio has cleared it's list and several other states have been able to get literally hundreds of people enrolled onto the ADAP programs; sadly several other states have continued to add to the rolls of people waiting for assistance.

ADAPs with Waiting Lists as of September 29, 20118,512 individuals in 9 states

STATE

AMOUNT

CHANGE

Florida

3,905

-193

Georgia

1,778

46

Idaho

40

3

Louisiana**

929

-183

Montana

13

-15

North Carolina

356

2

Ohio

0

-9

South Carolina

420

53

Utah

61

2

Virginia

1,010

21

ADAP Sept. 22th Watch List**Louisiana has a capped enrollment on their program. This number is a representation of their current unmet need.

Logged

leatherman (aka mIkIE)

All the stars are flashing high above the seaand the party is on fire around you and meWe're gonna burn this disco down before the morning comes- Pet Shop Boys chart from 1992-2015Isentress/Prezcobix